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Narrative Exchange and Self-Diagnosis 53
https://t.me/medicina_free
Even though access to medical information by laypeople is not a new
phenomenon, it has assumed a new persona, one that feels more pervasive, invasive, and disordering to contemporary health care providers.
There are web, apps, and direct-to-consumer advertising, which replace
concern about newspaper press’s “pursuit of lucre,” the patent drug
advertisements, and “enormities of Quackery” of the last centuries.
34
The stories doctors tell today about self-diagnosis are, for the most
part, very similar to those told by doctors from the previous era. The
dominant plot in these stories is of an unscrupulous for-profit industry vying for the ignorant patient’s attention, scornful of the important work of medicine. Lay ignorance is variably forgiven as often as
regarded with contempt, and thus, accounts of the patient behaviours
waver between sympathy and impatience. There is, however, a slightly
new vocabulary to describe the patients. They might be called the wor-
ried well afflicted with cyberchondria or health anxiety disorder. They are
likely to be well-educated and have time to think about their disorders.
They are still seen in the same paradoxical way by contemporary doctors as they would have been by their predecessors, as simultaneously
irritants and vulnerable victims, manipulated by external forces.
Glasgow physician Des Spence characterizes these worried well as
“educated patients, perhaps with too much time on their hands, who
repeatedly attend the surgery with reams of Internet pages. Dr Google
always diagnoses possible cancer or an appalling life-shortening degenerative condition, catastrophising all symptoms, irrespective of the
probability.”35 Redolent of Krecke’s historical depiction, Spence explains that the “worried well are anxious about their health, unwilling to accept reassurance, demanding investigation and referrals. They
then suffer unnecessary intervention and overtreatment with real lasting harm.”
His gripe is with a society that turns people into worriers. The call
for useless screening, the commercial interest to sell treatments for specific conditions, and the proliferation of online information all create a
perfect storm in which high-achieving patients will be compelled to see
their problems in terms of diagnosis and in terms that they are determined to control.
Like his colleagues of yesteryear, Spence and numerous contemporary doctors describe an impervious foe who pushes and prods patients towards self-diagnostic conclusions, encouraging them to turn
their back on well-trained physicians. These doctors protest the validity of the external information, which looks scientific enough to the
54 Diagnosis: Truths and Tales
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unsuspecting layperson, but alas is nonsense. It’s phony. It’s untested.
It’s deceptive, they cry.
Harrison and Kouzel proclaim that “bogus information may appear
in the guise of genuine evidence-based medicine and is often flanked
by marketing ploys offering miraculous treatments,”36 while Spence,
again, raises his voice to say, “The truth is that these apps and devices
are untested and unscientific and they will open the door of uncertainty. Make no mistake: diagnostic uncertainty ignites extreme anxiety
in people. We must reflect on what we might lose here, rather than what
we might gain. Will apps simply empower patients to over-diagnosis
and anxiety?”
37
Dr Tanya Feke, speaking from the Internet environment (the very
soapbox she critiques), proclaims the oft-repeated axiom that nonmedical information is shaping a self-diagnosis crisis that must be vanquished. Dr Google, she announces, uses outdated content and biased
information. He has no experience and provides no evidence to support his claims. He should be sued for malpractice!
Dr Feke is most concerned about how online guidance of the patient
interferes with the doctor-patient relationship: “It can lead to people
questioning their doctor’s judgment even after they have been properly
seen and examined. I admit my heart plummets when I hear the words,
‘but I read it on the Internet,’ at the end of a visit. While I appreciate that
someone wants to be proactive for their health, those words often mean
my patient has an agenda and will demand certain tests and treatments
even if there is not a medical indication, even if I carefully explain to
them why that is the case. This happens at least once every day.”
38
Not only are doctors’ stories relating the impact of the self-diagnosis
and its wobbly foundations on their personal relationships with their
patients, but they are also concerned with the degree to which an accommodating, and possibly not careful enough, physician might find
him or herself swept up in the unreliable self-diagnostic logic. A New
Zealand doctor and his colleagues revealed a case of missed appendicitis that they attributed to the patient leading them astray: “This case
is particularly pertinent as the patient, after attempting self-diagnosis
consulted his family doctor. A major lesson to be learned is when formulating a differential diagnosis extreme care must be taken not to be
39
unduly influenced by a patient’s self-diagnostic conclusion.”
Yes, the
patient’s proposed diagnosis plays an important part in the doctor’s
thinking. Eighteen per cent of diagnostic conclusions by doctors come
from the diagnosis presented initially by the patient.
40
Narrative Exchange and Self-Diagnosis 55
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Maybe, as Gualtieri suggests, the problem is centred in how the patient tells her diagnostic story to the doctor. Does the patient ask for a
diagnosis, or ask for confirmation of their own proposed diagnosis?
How that case is presented matters. Let me step back and give you a
sporting analogy. Until recently in the game of rugby41 when the referee
was unsure if a try had been scored, he could turn to the television referee (who can watch a reply in slow-motion from various angles) and
ask him one of two questions. He may say, “Can you see a reason not to
award a try (touchdown)?” Or he may ask, “Try or no try?” There is a
big difference between the two.
42
In the first case, the referee is not asking the television referee to engage in independent decision making, rather he is asking him to refute
the decision that a try has been scored. In the second case, he gives the
television referee full authority to make the decision. Essentially, he is
saying, “I couldn’t see anything. I don’t know. Help me out here!” To
the attacking team who thinks it has scored, the first question is a relief because it implies there is a score. The second question contains no
implication, and leaves the referee free to decide. The equivalent in the
diagnostic setting is the self-diagnosis, where the doctor is being asked
to confirm an existing opinion. Alternatively, the patient who brings
symptoms, rather than a presumptive diagnosis, is giving the physician free rein to explore and define the case.43 It is not so much that
doctors are swayed by the self-diagnosis that their patients bring to the
consultation room; it is more that the question is not the same and, indeed, may lead to a different outcome than if the patient presents with
symptoms rather than with a candidate diagnosis.
Doctors’ stories in which the patient is cast as a vulnerable and unsuspecting character, ripe for being taken advantage of by a devious
commercial player proliferate. But the story of self-diagnosis is far more
complex than simply that of a villainous commercial manipulator steering consumers astray. For the pharmaceutical industry to be able to
promote diagnosis in view of drug sales, diagnosis has to be a phenomenon upon which a layperson would latch. But more on this later. The
important thing is that doctors clearly want oversight of the sources of
information to which their patients have access.
Feke’s online article, referred to above, serves as an interesting case in
point: “Dr. Google wants you to think he is your best friend,” she writes,
personifying the online presence of self-diagnostic tools in more than
one way. Not only does she give him a professional title and a name,
but she also instils in him desire and agency: “It can lead to people
56 Diagnosis: Truths and Tales
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questioning their doctor’s judgment even after they have been properly
seen and examined,” she laments, underlining the upheaval the use of
online information can introduce into what she sees as a proper relationship with a diagnostic authority. She then lists the problems with
the information available to patients online for working out a diagnosis
on their own and concludes, “If Dr. Google were a real person, there is
no question he would be sued for malpractice. He often gives inaccurate diagnoses. He promotes unnecessary testing. He causes increased
worry and anxiety without a proper evaluation. He does not fulfill basic standards of care. Altogether, he breaks the tenant of medicine so
graciously put forth in the Hippocratic Oath: Do no harm.”
She sums up: “Take my warnings above to heart. If you have a real
concern, seek out an evaluation with a medical professional. They have
the training and expertise to help you on the path to health or at least
a diagnosis.”
A non-doctor replying under the pseudonym “Faxon” replies, “don’t
treat me as if I am a naughty child” and explains he would never ask
for a particular treatment simply because he saw it advertised online.
“Fickledame” wrote, “I would still be living in hell if it weren’t for Dr
Google.” Another writer agreed with Feke but admonished, “I think
we should all be careful to try and avoid the scolding tone with which
they are presented.”
As the historical review attests, quests for self-diagnosis have been
going on for well over a century. Yes, industry has perhaps a wider
reach now, and more tools at its disposal for communicating its messages. And yes, the public may be more uniformly schooled, or at least
equipped, in the use of the media which distribute these commercial
messages. But it is important to recognize that if over-diagnosis and
self-diagnosis are indeed increasing trends, this is also a reflection of a
cultural belief system that holds faith in diagnosis as a means of understanding the world. Seeing diagnosis as a cultural product is a recent
trend. While Mildred Blaxter argued for it in the late 1970s,
Brown called for a sociology of diagnosis almost 20 years later,45 it has
only been in the last decade that there has been a focus on diagnosis as
a topic of inquiry in and of itself.
I refer to the thinking of sociologist Irving Zola for this position.
When he discussed medicalization in a retrospective commentary
44
and Phil
46
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about his earlier works, he noted that the anti-medicalization advocates who raised a clamour before he, himself, started writing about
the subject, were insufficiently reflexive. His interest in the subject was
something different from that of his contemporaries. They were concerned with a kind of medical imperialism (today, we might add “or
industry machinations”), where doctors sat around the table, in their
white lab coats, with a determined intent to usurp normal life events
into their purview. Zola disagreed. For him, the problem of medicalization was one of over-reliance on the expert. It is the turning away from
the doula – the experienced layperson – to look with reverence to the
doctor, the lawyer, the engineer.47 I think the same factors may be at
play here in the self-diagnosis.
Yes, undoubtedly a roomful of pharmaceutical executives are sitting
around a table in Madmen style, plotting out how to get more interest in
their products. I can imagine their conversations. Somewhere someone
has to ask “but what is it that people want?” And someone else will
have to retort, “They want a sense of certainty, and of science. They
want to know that what they have is real, is important. That there’s a
diagnosis for what ails them.”
And this is how the pharmaceutical industry has become such a great
player in the self-diagnosis business. Yes, they’re plotting, but they are
riding on the back of public faith in medicine. It is popular reliance on
the expert that is at work here. When in the nineteenth century, doctors
implored the public to have faith in science and to avert their gaze from
the unqualified quacks, they probably did not perhaps anticipate that
as they asked their patients to believe in medicine as an explanatory
framework, the patients would take this commitment to science to such
an extreme that they would start talking the talk themselves, rather
than turning to their doctors to listen.
Owen Whooley is a medical sociologist who explains that the way
medicine got its grip on professional power, climbed to the top of the
hierarchy of the professions, was via the control of the episteme. To elbow out the homeopath, the hydropath, the magnetizer, and the Fletcherites, medicine got a hold of the terms of knowledge. If they could
control the means by which disease was understood, the facts of disease, then they could control its management, its therapies, and its institutions. Diagnosis was then, and is now, vital to the episteme.
48
The lay self-diagnosis emerges precisely from the strength of medical
discourses around diagnosis, so we shouldn’t be surprised at lay use of
diagnosis to explain disease. Medicine has afforded such pre-eminence
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to diagnosis as a way of understanding what ails us, for determining
the treatment, for predicting the future, and for designating the professions that we should simply expect laypeople to get their hands on
diagnosis; the public have been so long indoctrinated to the importance
of diagnosis that they have absorbed the lesson to a fault.
What makes this indoctrination so interesting in the context of this
book is the way in which it serves as the basis for a story over which
patient, doctor, and others tussle. The concern voiced by doctors is
clearly over diagnosis and not anything else. It is rarely, for example,
about symptoms (except in the case of medically unexplained conditions, an important exception49). It is sometimes about treatment, but
usually only in relation to a treatment which is linked to diagnostic
disagreement. No, the tension comes from how the symptoms are narrated, linked, and explained.
The location of power is under dispute precisely because of the importance assigned to diagnosis by the medical profession in its formative years and still today. While medicine instructed the public about
the importance of diagnosis to gain ascendency over competing therapeutic pretendants, it probably didn’t occur to them at the time, that
the public would end up focusing on diagnosis to gain ascendency over
medicine! As “Faxon” wrote above, she is not a naughty child; rather,
like Davison’s study participants, she uses the wider public knowledge
to explain what afflicts her. “Faxon” wants to cast herself as the main
protagonist in the story of her illness – an active agent with power to
drive the narrative in the direction of her choice.
Patients’ stories are important to them, but they are important to the
doctor as well. We have seen how this is a point of tension, because
patients are unlikely to consult a doctor if their story does not have
diagnosis as a frame, yet at the same time, by appropriating diagnosis,
patients step outside their authorized realm of operation. They must
simultaneously believe in diagnosis but leave it in the hands of the
medical professional. In the next chapter, we delve in to the stories of
doctors as they narrate their role in divulging diagnosis. It’s a hard task,
and as they tell these stories, we learn more about what it means to be
a doctor and how the profession constitutes itself via medical stories of
diagnosis.
It’s a hard line to hold!
CHAPTER THREE
https://t.me/medicina_free
“The Expertness of His Healer”:
Diagnosis, Disclosure, and the Power
of a Profession
Let’s return to the doctor’s office from the Introduction, where the individual was waiting a bit anxiously, to hear the doctor’s diagnosis. Apprehensive perhaps, but so too was the doctor, weighing up the words,
thinking through how to present the case, reflecting upon the consequences of the maybe-serious diagnosis she was about to deliver. This
particular diagnostic moment was nestled in as one among many in
which this doctor had previously participated, and it was also for her, a
moment of storytelling. On the one hand, she was preparing the story
she would deliver along with the diagnosis, choosing her plot carefully,
and deciding whether to cast this diagnosis as an opportunity, a lucky
break, or seriously bad news. She sets the frames that shape the story
and describes the potential twists. She enumerates the characters and
chooses her metaphors. She would have a tale to tell the patient.
But she would also have a story to tell herself, about herself and the
work she does. She might have thought to link the characters (the patient and herself) with other characters she had seen in the past, anticipating pitfalls and side stories, relying upon flashbacks to which she
will need to return. The story of her work mingles with the story of the
disease, its histories, legends, and fictions. Her story could be a heroic
one, of tricking disease to rescue the patient, or one of despair, where
the disease is an ever-present enemy, ready to strike despite her best efforts. In any case, her story is one which will imprint upon the patient,
the family, the entourage, an outline which will be difficult to erase
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or reimagine. It creates, often inflexibly, a template for the subsequent
retellings. This particular moment of storytelling is thus frequently enduring and determinant, it casts a permanent shape on the interaction,
the condition, and the individuals. It is dominant.
Its power is not only contained in the blow delivered by the story’s
telling, if blow it will be. It is also embodied in the way it constructs
the doctor, both epistemically and morally. Its impact is in the way it
develops understandings – both of the patient and of the doctor – of
what it means to be a doctor. Doctors’ writings are replete with stories
about themselves, their patients, the diagnoses they deliver, and what it
means to be a doctor. The discursive construction of their stories, and of
the stories told about them, are framed by the idea of truth. This seemingly simple term is an important anchor to the authoritative power of
the diagnostic narrative.
These stories convey authority, not only to the diagnosis but also to
the individual who delivers the diagnosis. Doctors become soothsayers
as they provide a sense of the future. Instead of divination, however,
medicine uses science to make sense of illness and does so by labelling disease, prescribing treatments, and announcing the prognosis in
relation to the diagnosis. The impact of these tasks is no less great than
those of the soothsayer, and Hippocrates recognized that when he described the power of the diagnosis to anchor the doctor’s status: “[It
will] increase his reputation as a medical practitioner.”
1
Hippocrates words suggest a calculated positioning of the doctor to
achieve status. This is not generally the type of power to which I will refer in this chapter. Rather, I make reference to the place of the doctor in
the social schema. I am talking about what Alfred Schofield described
in 1906, the way that “a doctor is weighed in the balance as no other
man is. Every act of his, every word he drops, is seed which will surely
produce fruit. All he does has a double force.”
2
The power of the medical story is contained in a phenomenon Owen
Whooley calls the “truth-wins-out narratives.” The ascendency of medicine’s knowledge over other forms of knowledge lends weight to the
power of its assertions and forces assent to their models.3 At the same
time, controlling what counts as valid knowledge, even in arenas going
well beyond pathophysiology,4 the profession of medicine cements its
position as the authorized diagnosis storyteller.
Still in the contemporary era, the diagnosis story continues to confirm the status of the profession (but more on that at the conclusion of
this chapter). Diagnostic privilege has been something that professional
Diagnosis, Disclosure, and the Power of a Profession 61
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groups scrap over: Who should be allowed to diagnose and in what
contexts? Doctors take diagnosis very seriously as part of how they define themselves as a profession and how they view their patients. In
this chapter, we look at the stories they tell about revealing a diagnosis,
stories that features widely in their writings, their codes, and their protocols, and that, as I wrote above, impose a particular form on the stories others – patients, their families, the wider public – are able to tell.
We use the past as our departure point for a variety of reasons. The
most important one is that it is easier to look critically at bygone eras,
for the simple reason that we have a bit of distance. The stories and
the power they convey are more visible, as they are cast in terms less
familiar to us, more quaint (even though they may still follow the same
or similar plot lines, as our contemporary stories). It is much harder to
see this in today’s material, precisely because it is closer to us.5 But as
we look at the stories associated with diagnostic delivery, I will highlight the historical to tie it in, later in the chapter, with the contemporary. What is fascinating is to see how little has actually changed, even
though the trappings look so different at first glance.
I will start by pursuing the line prompted by Hippocrates’s words,
that is to say, to consider how the stories proposed by doctors in relation to pronouncing the diagnosis have been connected with the profession, its status, and its power. To do this, I look at the abundant works
written by and to doctors discussing whether they should reveal a diagnosis to the patient. But I will also look at the stories they tell, not
about themselves but about their patients and the diseases they have.
By studying their stories, we can learn much about how doctors see
themselves, their patients, and their competitors; their role; and the role
that diagnostic knowledge played, and continues to play, in maintaining their respective standing.
This chapter presents a far-reaching survey of publications for doctors, written, for the most part, by doctors. To make this material relevant to our contemporary interest, I have started in the mid-nineteenth
century at the time when scientific medicine became the status quo. My
stopping point is within the lifespan of some readers, that is to say in
the early 1960s, which I call the beginning of the era of informed consent.
The move towards a systematic approach to informing patients about
their condition and treatments – in fact, authorizing patients, at least
in principle, to engage in medical decision making – started to gather
steam in the early 1960s, moving towards generalization in the mid- to
6
late 1970s.
It shifted many of the debates about telling patients what
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ailed them, and it also changed the details of the diagnostic stories;
however, as we will see in the second half of this chapter, many stories
remained the same even while the contexts shifted.
Medical power is rarely considered explicitly as such in medical
writings. It is usually experienced, and expressed, rather, as a heavy
burden, to be shouldered with infinite care. In a model of medical paternalism, there is a trade-off in the distribution of power. The patient
must sacrifice autonomy in favour of what the doctor believes is in the
patient’s interests.
7
In line with this paternalism, one of the most prevalent stories that
surfaces both in historical medical writings is of the pensive and sensitive doctor heavily burdened by a knowledge he or she must share with
a fragile and vulnerable patient. Typically, the patient is of a similar
class to the doctor. It is rare that these stories deal with people of other
classes or circumstances, except to consider them as a generic category
to be dealt with rather than a subject within a specific context. As I explained in the Introduction, the stories of diagnosis are often typical for
the absences which they punctuate, the voices they don’t air. They are
the stories of those who can afford themselves the care of a doctor and
whom a doctor would be willing to attend.
Historical accounts of the poor tended to be dismissive, characterizing the patient as a different kind of patient all together, “much easier
to attend to than the higher classes; their therapeutics more clearly indicated, the response of their system is generally more prompt.”8 However, the physician who wrote these words carefully advised young
doctors not to shun the poor, for the benefit they could bring to a doctor’s practice. They are a “potent lever to assist in establishing your
professional reputation” he wrote.
9
The typical narrative template has three protagonists: the patient
(and his or her entourage), the doctor, and the disease. The careful doctor cautiously weighs up the patient’s situation and character before
dispensing the amount and type of information required to reduce his
or her suffering. The narrative is frequently delivered as hypothetical
story narrated by a sage and experienced doctor in which he makes
generalizations about numerous cases he has witnessed over the course
of a long career. Alternatively, the medical narrator may relate a series
of individual stories in which he presents his previous successes and
failures, each one in aid of whatever point he is trying to defend.
10
The
latter are frequently assembled as points and counterpoints to illustrate
a range of back stories and plots twists that the unwary clinician must
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